NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation.”
We understand the purpose of the roundtable is to move forward by removing the roadblock to implementation and publish the finalised guideline. We will continue to do everything possible to ensure that it is published without delay in its current form in line with NICE’s established procedures.
The ME community has been badly affected by the unprecedented delay in publishing the new guideline. This guideline has been worked on for over three years and has used the best available evidence as well as the lived experience of people with ME/CFS. The delay means that the 2007 guideline continues to be referred to by clinicians. In order to ensure that clinicians can implement the best quality of care, we call upon NICE to immediately add a warning to the previous version of the guideline along with an instruction to use the November 2020 draft guideline until the final guideline is published.
The response to our petition calling on NICE to publish the finalised guideline has been overwhelming. Gill Leng, Chief Executive of NICE responded to #MEAction UK’s petition of over 16,500 names saying: ‘NICE has acknowledged that this petition clearly emphasises the strength of feeling on this important issue’.